Aiden was four and half months old when his parents noticed rust colored urine in his diaper.  A urinalysis at his local pediatrician’s office discovered blood and protein, as well as a positive infection culture a few days later.  Since urinary tract infections are uncommon in boys, it was suggested that Aiden be seen by a specialist.  Aiden’s pediatrician referred him to Children’s Hospital in Milwaukee as they had the first available appointment.  Their entire lives were about to change forever… 

Prior to seeing the renal specialist in Milwaukee, an ultrasound was performed.  The ultrasound revealed a large tumor/mass on Aiden’s right kidney.  Needless to say, Nicky and Jeremy were scared, devastated and all of the emotions that could possibly accompany finding out your child has a tumor. At the time, it was thought possible that the tumor could be benign. However, regardless of its pathology, it had to be removed as soon as possible.  Aiden had a chest CT scan performed and was scheduled to return for the tumor removal the following week. 

The night before the surgery consult, Aiden’s parents received a call from Dr. Browning (Aiden’s oncologist) informing them there was a 90% certainty that Aiden would require chemotherapy.  With that said, plans were made for Nicky and Jeremy to meet with the surgeon (Dr. Oldham) as soon as possible.  During that meeting, Nicky and Jeremy were informed that the chest CT scan revealed metastases on both of Aiden’s lungs.  Dr. Oldham also explained that the tumor was in a crucial spot and that removing the tumor at that time posed a risk of hitting the large vein called the vena cava.  The plan of action was to biopsy the tumor so they knew what type of cancer they were dealing with, and to also place a central line in Aiden for chemotherapy. 

The central line placement was performed the following day.  A few days post-surgery, pathology confirmed that Aiden had a very rare form of cancer known as a Rhabdoid.   Rhabdoid is a very aggressive form of cancer that typically does not respond to chemotherapy…things were looking very grim.  Feeling alone and as if their whole world was being blown apart, Nicky and Jeremy were completely numb from the inside out.  Aiden was put on the HOT (Hematology, Oncology and Transplant) Unit and things began to move very quickly, with bone aspirates to check his bone marrow and an MRI to look at his brain…all of which came back great.  Jeremy and Nicky sat down with Dr. Browning and discussed Aiden’s situation.  It was a mutual decision to start chemotherapy immediately because without it, Aiden wouldn’t survive.

With chemotherapy underway, Aiden began to have some bladder issues and once again things were about to take a turn.  On June 20^th, Aiden became very lethargic.  Labs quickly confirmed that his hemoglobin was at 3.5…a serious emergency situation.  Aiden was bleeding out through his bladder, basically bleeding to death internally, and decisions needed to be made quickly.  (Later, the general consensus for the cause of his hemorrhaging was that the tumor was beginning to die very rapidly…an uplifting sign that the cancer was responding to treatment).  Soon the room was full of doctors.  Aiden had an emergency embolism performed by Dr. Kay (a tremendously gifted woman with an amazing team that saved Aiden’s life) to try and stop the bleeding.  If Aiden made it through the embolism, he would face an additional surgery the very next day.  They were rushed to PICU and things once again happened very quickly.  Jeremy and Nicky were given time alone with Aiden because there was a very good chance that he would not make it through the procedure.  Aiden was rushed off and the family waited.  Every door they heard open made their hearts stop; it was very scary.  The surgery was performed after-hours, so the area was very quiet…you could hear every noise.  A few hours later family received the WONDERFUL news that Aiden remained stable during the procedure and that he did in fact make it through.  The team performing the procedure was amazing…Jeremy and Nicky couldn’t have asked for a better outcome.  The days ahead were also going to be very critical because Aiden now had to undergo a surgery that was going to be very risky.  The fact that his counts would be dropping from the chemotherapy would in turn slow his healing creating an even more difficult surgical/recovery situation.  Jeremy and Nicky went back to PICU to be with Aiden.  It appeared as though every tube imaginable was coming from their little boy.  It was difficult because Nicky couldn’t hold him or comfort him as a normal four month old needs to be comforted by his mommy.  They had the best nurse in PICU named Tonya and she took very good care of Aiden, Nicky and Jeremy.  The entire staff in the PICU was phenomenal, the doctors and the nurses were great. 

On June 21^st, the couple’s four-year wedding anniversary, Aiden had surgery to remove his right kidney along with the tumor.  The procedure was estimated to last three plus hours with Dr. Oldham performing the surgery.  There are no words to thank this wonderful man the way he should be thanked.  He saved Aiden’s life and did an amazing job with his surgery.  The surgery took less time than expected and it was a success.  The tumor was removed as well as some of the surrounding lymph nodes.  Dr. Oldham said the procedure went much easier than he anticipated.  Dr. Oldham is truly a brilliant man; the couple could not have asked for a better doctor to operate on their son.  Nicky and Jeremy received the best anniversary gift imaginable.  Aiden (and Nicky and Jeremy) spent nearly a week in the PICU, where he was progressing very well.  It wouldn’t be long before he was back on the HOT Unit. 

After two weeks on the HOT unit post-surgery the young parents were finally able to spend a short while at home with Aiden.  The next several weeks were followed by weekly chemotherapy and doctor visits, as the hope was to clear the metastases from the lungs.  Good news was received after the first scan that the metastases were in fact shrinking.  With that knowledge, a new treatment plan was discussed that could be implemented if the metastases cleared entirely.  If the cancer cleared completely from the lungs, Dr. Browning explained that Aiden could harvest his own bone marrow stem cells to use after three high dose chemotherapy treatments.  All were in agreement to pursue this treatment plan when and if possible.  The second CT scan showed a normal report, which meant the metastases were gone…WONDERFUL news once again.  Aiden and his parents were about to enter a whole new realm…. 

Aiden harvested more than enough bone marrow stem cells for three rescues following the three high-dose chemotherapy treatments.  They needed a minimum of six million cells, and Aiden gave them 21 million cells.  After Aiden’s first high dose treatment, he became very ill and had to be transported from the local hospital to Children’s Hospital.  Things were touch-and-go for a while after Aiden’s first treatment; doctors were not sure if he was going to be facing another emergency surgery or if things would gradually get better on their own.  Thankfully, there was no emergency procedure and with time Aiden got better. Oncologists now had the data from Aiden’s first treatment to help with the subsequent rounds.  This information helped the staff know how to treat him and what to look for if he in fact got sick again. 

Aiden sailed through the next two treatments, recovering well and only hitting a few minor bumps.  He did have to be treated for the same complication all three times.  However, after each of his last two treatments, the symptoms were caught so quickly (thanks to the wonderful doctors and nurses on the HOT Unit) that he didn’t get nearly as sick.  After his second high-dose treatment, Aiden came home on antibiotics and fluids.  It was a bit interesting running med’s around the clock, alternating between his two lines.  Although it was stressful, Nicky and Jeremy were willing to do anything to allow Aiden the opportunity to be at home before his next and final treatment.

With treatments completed, Aiden had his PICC line removed.  He had an MRI of his brain followed by chest, abdomen, and pelvis CT scans, all of which looked great.  His port was removed and he and his family had the best Christmas gift of all.  Aiden was able to be with the entire family…it was fantastic.  Then on January 18^th, Aiden celebrated his first birthday; it was wonderful.  He destroyed a cupcake and his cake with his entire fabulously-supportive family cheering him on.

November 2010

In November, Aiden visited Milwaukee Children’s Hospital for his routine scans.  We were overjoyed to spread the WONDERFUL news that Aiden’s scans were PERFECTLY CLEAR!  This marked a huge milestone for Aiden…three year’s cancer free – a milestone we are so THANKFUL for! 

Aiden’s appointments were extended to once every six months (previously every three) with a chest x-ray and abdominal ultrasound being performed at that time.  

The prayers, support and well-wishes from family, friends and prayer chains across the country have made a huge impact on our lives.  Words simply cannot express the thankfulness we feel for each and every prayer you quietly whispered for Aiden and our family.    

January 2011

January brought an abrupt end to Aiden’s cancer-free status.  Aiden had been suffering from what was believed by all to be the flu (Nicky had suffered from the flu around this time and being in the midst of the flu season, the diagnosis was very logical).  Early morning on December 31st, Aiden began throwing up and simply couldn’t stop.  Nicky and Jeremy took him to the local ER in the early hours of New Year’s Eve and then again on New Year’s Day.  Aiden was given anti-nausea medicine and ER doctors explained he would be very tired and needed rest.  On January 2^nd, Aiden suffered a seizure and was transported by ambulance to the local ER.  Aiden was unresponsive and unable to move his right side.  A brain CT scan delivered the dreaded, gut-wrenching news the family thought they would never again face…Aiden had a tumor on the light side of his brain and a smaller area of concern in the pineal region of his brain.  Although completely devastated and utterly shocked, Nicky’s first words were “get us to Milwaukee.”  Aiden was airlifted to Milwaukee Children’s Hospital via Children’s Hospital helicopter.  There wasn’t room for Nicky or Jeremy on the helicopter so they made the journey to Milwaukee by car unsure what lie ahead for Aiden. 

Once at Milwaukee Children’s Hospital, Aiden was stabilized and placed on anti-seizure medication.  Many tests were performed and it was determined that the tumor on the left side of his brain should be removed ASAP.  The tumor in the pineal region of Aiden’s brain, however, could not be operated on and would need to be treated with radiation and chemotherapy instead.  Critical motor skills and functions that allow for daily living are controlled in this area…operating would not be an option as quality of life would be monumentally impaired.  Surgery to remove the tumor was successfully performed on January 6^th. 

Pathology on the tumor confirmed the Rhabdoid diagnosis.  Due to the rarity of this form of cancer, oncologists and other specialists were confident that Aiden had a genetic predisposition to this particular type of cancer.  Children who are predisposed have a deletion of a specific tumor-suppressing chromosome in their DNA.  Genetic testing confirmed that Aiden does in fact have the deletion of the chromosome making him genetically predisposed to this form of childhood cancer.  Aiden will have to be watched very closely for signs of possible cancer in his childhood years.  They will continue to perform regular scans and checks of Aiden on a semi-annual or annual basis, but it will be a watchful eye that will be the best determinant of recurrence. 

After the surgical recovery, Aiden began the first of his 32 daily radiation treatments.  A combination of Jeremy and/or Nicky and Aiden would travel to Milwaukee early each weekday morning (leaving between 4:30-5:30am) for Aiden’s radiation, and would return home around 1:00-2:00 in the afternoon so that Aiden was in his comfortable home environment as much as possible. 

Aiden has had many bumps along his treatment road, including a replacement of the catheter in his chest area.  The catheter line, used for the delivery of chemotherapy and blood work, had moved up against Aiden’s chest wall preventing blood draws from the line.  As a result, Aiden had to undergo surgery to replace the catheter.  During the replacement on the catheter line, Aiden’s lung was punctured.  Aiden has also dealt with other issues including a difficult harvest procedure to collect enough of his bone marrow stem cells for the rescue process following high-dose chemo.  Aiden suffered from line infections requiring hospitalization and antibiotics, an 18 day stay in the hospital following his first round of chemo (admitted for fever but remained inpatient until his counts recovered), and mucositis (mouth, throat and GI tract sores and inflammation) due to chemo. 

Aiden has completed his regular rounds of chemo and is now set to begin the high-dose portion of his chemotherapy treatment.  Aiden’s treatment will be performed as his body tolerates.  He harvested enough stem cells for three rounds of high-dose chemo; however, his body will dictate his treatment.  His kidney function is being watched closely since he only has one kidney and the chemotherapy is difficult on the organ. 

Aiden is a very strong and energetic child.  When he feels well, he’s ready to have fun! 

His cousins love to spend time with him and enjoy lots of laughs.  Aiden loves the zoo.  At the end of May, Aiden’s five young cousins took the day “off” from school and enjoyed a road trip to the Madison Zoo with him.  Although a mist fell the entire day, Aiden’s two aunts, his Momma and cousins had a GREAT day…they were pretty much the only people silly enough to visit the zoo in the rain!  Aiden can’t wait to visit the San Diego Zoo after he’s done “getting fixed”.  Nicky and Jeremy were told that visitors to the San Diego Zoo can actually get up-and-close with some of the animals…he’s excited to feed the giraffes and other zoo creatures.